New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

ebarb
Regular Member


Date Joined Oct 2007
Total Posts : 23
   Posted 1/24/2008 6:53 PM (GMT -7)   
I have posted on here before but it has been awhile so I am going to do a quick recap. 
 
I was having horrible nerve pain so I was referred to a neurologist who performed a MRI.  The MRI showed white spots and he said well I would say you have MS but you are too young. (I am 24)  So the doctor told me he didnt know what was wrong with me, doubled my Lyrica and sent me on my way.  Well I didnt like that so I saw another doctor who said she definitly thinks its MS and she gave me a referral to a neurologist who specializes in MS.  This doctor did another MRI on my brain and spine.  He found that I have a hole in my spine and he said I have significantly less brain fibers than I should at my age.  He said it could be the beginning of MS but he isnt sure.  So he gave me another medicine, Cymbalta, to take on top of the Lyrica for the nerve pain.  He said he doesn't know what is going on he wants me to repeat the MRI in a few months and see what it looks like then. 
 
Has anyone experienced this?? He said the hole in my spine would definitly explain why I am in so much pain, but didn't really seem like he knew what to do.  I hate this waiting game. I go back to him at the end of May and I know he is just going to say OK, lets repeat the tests and then I will see you again in another month. 
 
How do you deal with the constant pain, weakness, and fatigue?  I work full time as a second grade teacher and at the end of the day I am so drained I feel like I just want to crawl into bed.  It isnt fair to my husband and our 6 year old daughter.  But I dont know what to do.
 
Elaina

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 1/24/2008 8:26 PM (GMT -7)   
Hey Elaina

Wow!! I"m so sorry!! I've never heard of ms causing a hole in u' spine! I may just not be aware of it, but it's not something that's in the 'norm' if it is. I"m sure others will be along to offer more info than this, but i just wanted to let u know i am thinking of u and praying u'll find answers and relief soon.

I use Cymbalta for relief of some symptoms, but not for pain. I have some nerve pain and for that i use Neurontin. It works great! It may be an alternative for u if u don't get any or enuf relief with the other meds. Take good care friend and let us know how this all goes for u. I can't imagine how u must be feeling now, but we're here to help u thru this as we can. Lean on us all u like friend.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/25/2008 5:06 AM (GMT -7)   

I've not heard the experession "hole in the spine", nor a description of "significantly less brain fibers" used to describe MS.  Is that his exact description? Do you by chance have a copy of your MRI? Maybe some language in there would be more descriptive.  People with MS CAN have spinal lesions...just like brain lesions...and the spinal lesions can cause disability, usually from the point of the lesion, down. Like, I have spinal lesions that have caused my legs to no longer function well.  But those are the same sort of lesions that appear in the brain, and I've not ever heard them described as "holes".

At any rate, the doctor's "orders" to you -- to wait and watch, wait and see -- are pretty typical.  They'll tell you "come back in (some) months and we'll check again."  What that generally REALLY means is this:

"If there are no changes in your situation, no new symptoms, no worsening of current symptoms, come back in six months and we'll check.

But if there ARE changes, if there ARE new symptoms, if there IS WORSENING of current symptoms, call, report all that, and we'll get you in sooner."

So you should be keeping a log of your symptoms..and note if they worsen, note if there is some pattern you can detect to their happening (like, if you get overheated, or overchilled, or overtired.) Note NEW symptoms, and if they remain, or come and go.  Note the fatigue (pretty common in MS, and in other disorders) and if it worsens. And then call the doctor earlier than May if there is significant change.

I'm sorry you're stuck in the "wait and see" zone!  Take care.

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


ebarb
Regular Member


Date Joined Oct 2007
Total Posts : 23
   Posted 1/25/2008 7:52 AM (GMT -7)   
I took the Neurontin before I started the Lyrica and I had to stop it because it made me woozy.  I felt like I was drunk all the time and it is very hard to teach 20 seven year olds when you feel drunk!  I have been on the Lyrica for about 6 months and it seems like my body gets used to it and then I have to up the dosage.  Which Im sure is the norm for a lot of meds.  My doctor said the Cymbalta is advertised to treat depression but it also treats nerve damage.  So I am hoping it works because it is so hard being in constant pain all the time.
 
I was a little confused when he told me I had a hole in my spine too.  But he never mentioned the word lesion.  I do not have a copy of the MRI.  But it showed up on the MRI as a white dot in the center of my spine in my neck.  I have been searching on the internet to find out more information but keep coming up empty.  He said the test with the brain fibers is a new test that they just started doing recently.  It showed my brain in all different colors, he said it was a fiber optic thing. 
 
He also referred me to a neurosurgeon so he could look at my spine.  Maybe he will have more insight about it.  I dont know when I am going there, I have to wait for my insurance to approve it.
 
Thank you for your replies!
 
Elaina

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/25/2008 9:36 AM (GMT -7)   
Well, if he referred you to a neurosurgeon to look at the "hole" -- he may  not be sure what it is...is it a "lesion", or is it some "mechanical problem" that the neurosurgeon would identify. I guess you're going to have to wait until that appointment for further clarification! I'm sorry.

...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 1/25/2008 11:53 PM (GMT -7)   
Hey Elaina,
 
I don't have any words of wisdom for you, I am sorry.  I just wanted to show my support.  I feel for you.  I am a fifth grade teacher and I know how physical your job is.  I hope you get some relief soon. 
 
Cymbalta is supposed to be a wonderul med.  I truly hope it helps you.  Good luck and keep us posted. 
 
Love and prayers,
 
Gretchen       co-moderator MS board       diagnosed with MS July 2006


ebarb
Regular Member


Date Joined Oct 2007
Total Posts : 23
   Posted 1/26/2008 12:42 PM (GMT -7)   
Ok, since nobody has heard of a "hole in your spine" including a friend's mom who is a nurse, I have been searching the internet to find something and keep coming up empty! I was searching google images for Spine MRI's looking for pictures like mine. The only ones I could find that looked like mine were MRIs with spinal lesions. They actually look exactly like mine! But the doctor never mention a lesion. I am so confused. I think I am going to call the doctor's office on Monday and find out exactly what is going on. I mean I should be able to find something on the internet! Thank you so much for your support, it means a lot!

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/26/2008 2:04 PM (GMT -7)   
ebarb said...
Ok, since nobody has heard of a "hole in your spine" including a friend's mom who is a nurse, I have been searching the internet to find something and keep coming up empty! I was searching google images for Spine MRI's looking for pictures like mine. The only ones I could find that looked like mine were MRIs with spinal lesions. They actually look exactly like mine! But the doctor never mention a lesion. I am so confused. I think I am going to call the doctor's office on Monday and find out exactly what is going on. I mean I should be able to find something on the internet! Thank you so much for your support, it means a lot!
Maybe he was just carelessly using that term instead of "lesion". Or thought if he used "lesion" you'd do what you did for "hole in the spine", google it, and find all sorts of scary reasons for lesions, including MS, and until he KNOWS what it is (learns what the neurosurgeon thinks), he wasn't willing to use "lesion"?
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 1/26/2008 4:29 PM (GMT -7)   

That sounds about right.  No one used "lesion" with me until I had the o-bands to go with that.  Before that, The neurologist called it a "spot".  Then there were two "spots".  After the spinal "spot" was found.  They went on an o-band search and suddenly they were "lesions". 

Good luck on your quest for answers.

Love and prayers,


Gretchen       co-moderator MS board       diagnosed with MS July 2006

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 10, 2017 7:37 PM (GMT -7)
There are a total of 2,903,821 posts in 318,688 threads.
View Active Threads


Who's Online
This forum has 158098 registered members. Please welcome our newest member, Smitty.
331 Guest(s), 9 Registered Member(s) are currently online.  Details
Husband Johnny, aphysicalwreck, pilatesgal, countess18, Lqqkout, Hoagie, Girlie, bummedinsocal, Lynnwood